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EAT => Food Allergies => Topic started by: ENMS on June 13, 2012, 15:48:54 pm

Title: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: ENMS on June 13, 2012, 15:48:54 pm
Does anyone have experience with this?

DS is 6 months and suffers from severe reflux. We have gone through a lot of meds for that and he is currently on Nexium and Zantac.

We have had much difficulty with the introduction of solid foods. He had reacted to rice cereal, barley, sweet potato, and butternut squash.

The allergist today diagnosed him with FPIES. It is such a relief to finally have a name to what he has, and to be supported and validated - I am not crazy, he really has a problem with those foods!

We will be meeting with a dietician on a regular basis, starting tomorrow. She will help us with the introduction of solid foods. We will also see the allergist to report on the progress, on a regular basis.

Luckily he has a mild form of FPIES - it is a delayed reaction after usually 4-5 days of introducing a new food, and it does no involve extreme vomiting as I've seen when I googled it. Mostly a reflux flare up, diarrhea, and general discomfort.

From what I understand, by the time he's 3 years old he should be much better. But we will definitely not be trialling milk and soy, which are the most common triggers, anytime before he's 2 years old.

She was amazing this allergist we saw. Right when I finished my story, she looked me in the eye, and she said 'we'll be doing the allergy testing, but I'm telling you right away - it will be negative.  But his problems are real, they are not in your head - he has FPIES.  The worst is behind you, but you are not out of the woods yet. We are here to help you and work with you. You will not be alone with this'.  I started crying right away.  It is so amazing to hear her speak to me person to person, as opposed to be paeds I've been seeing that clearly think I am crazy!!!
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: essexlemon on June 13, 2012, 16:18:19 pm
No experience but just wanted to send hugs and congrats on finding someone who has listened to you properly.
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: deb on June 13, 2012, 16:29:51 pm
Agree, so glad you've found a sympathetic and understanding doctor!!!!

This isn't something I know anything about so I'll be following along. :)
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: koe2moe on June 13, 2012, 16:53:25 pm
That is wonderful!!! :)  I want to see her, too!!! 
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: my3girlsjde on June 13, 2012, 17:12:33 pm
So many hugs and I know your relief. Our allergist has suggested this as well but we're waiting to get the results back from her allergy testing (we now know negative). We've been told non IgE mediated food response and a lot of this causes reflux and diarrhea and inflammation for her.

From what I understand, this is very hard for many Dr's to understand as it cannot be exactly measured. It's incredibly frustrating as it involves a lot of documenting and watching and waiting for symptoms that can take days to appear.

We have also tested negative to every single allergy test and we've turned down celiac testing until next year. I remember the look I got from both my Dr and the Paed the first time E's dairy allergy test came back negative. I felt like they thought I was a fraud. You are SO LUCKY you got in to the allergist and such a good one so quickly. She sounds amazing and I'm so happy for you to be getting some answers.

I do want to let you know that we've had a lo of challenges with tropical fruits and wheat as well as the dairy and soy. You may want to ask your allergist about them as well as the dietician as our allergist felt they were common in kids like E.

And FWIW, we've mostly given up on trying to explain it to a lot of people and just use the term food allergies even though this isn't the case  For some we do go into an explanation but the term allergies seems to get the most understanding.

Is there a plan for the treatment of the reflux any Korea than what's currently going on with the Meds you're using?

Many hugs and glad you're getting somewhere.
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: koe2moe on June 13, 2012, 17:15:01 pm
Is there a plan for the treatment of the reflux any Korea than what's currently going on with the Meds you're using?
Vicki, pls add that to the game thread LOL

Elise and Vicki, did or would they test for IgD?  I will go read up on FPIES, just wondering if it was closer to what I was having. 
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: Jimbob on June 13, 2012, 17:17:58 pm
I don't have any experience with this but I do know that www.kidswithfoodallergies.org has a forum for FPIES and there is a lot of knowledgeable people on there.

Kelly x
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: Jimbob on June 13, 2012, 17:31:39 pm
From what I remember when my ds was younger and we were trying to figure out all his medical issues I was lead to believe that a FPIES reaction would usually occur between 2 and 8 hours and would usually include vomiting. This does not mean the diagnosis you have for your lo is wrong of course. I am not a medical trained person and I do't know a lot about FPIES so I could be completely wrong.

Kelly x
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: ENMS on June 13, 2012, 17:35:03 pm
You are SO LUCKY you got in to the allergist and such a good one so quickly

I know, I just cannot believe it.  We are so lucky, I am so thankful we got to see that amazing doctor today!
We've been told non IgE mediated food response

Exactly what we were told as well. M also reacts to all the 'standard' foods of FPIES, although thankfully his reactions are not strong.  It is rare apparently, the allergist told me she's met with 4 FPIES babies / children in here career and she's been doing this for more than 10 years.

From what I understand, this is very hard for many Dr's to understand as it cannot be exactly measured. It's incredibly frustrating as it involves a lot of documenting and watching and waiting for symptoms that can take days to appear.

She actually got quite mad at the paeds at the clinic... she said recently she did a training for them on FPIES, and she couldn't believe I saw so many paeds at the clinic and none of them suggested this.

And FWIW, we've mostly given up on trying to explain it to a lot of people and just use the term food allergies even though this isn't the case  For some we do go into an explanation but the term allergies seems to get the most understanding.

I think that's what we'll be doing as well. It does get so complicated.

Vicki, on my way back home, I actually thought of you and E... I was wondering if that was what E had, since the symptoms I read seem similar. She is a 'delayed reaction' kid, just like M, after 5 days or so...  I'm so sorry you didn't get to see an allergist sooner (((HUGS))).  So thankful we did see that good paed just once, and she referred us to the allergist. I will be thankful for her for a long long time. Hope I see her again one day so that I can tell her in person.

Is there a plan for the treatment of the reflux any Korea than what's currently going on with the Meds you're using?

She said to continue with the two meds... I was happy to ask if this meant I could wean soon but probably not unfortunately.

I do want to let you know that we've had a lo of challenges with tropical fruits and wheat as well as the dairy and soy. You may want to ask your allergist about them as well as the dietician as our allergist felt they were common in kids like E.

Thanks, I definitely will.

She did say to write down all of the dates at which we tried different foods, and to try again 1 year after the initial try.  The good thing about this, is that it seems that when I remove the offending food, he heals quickly after about a week. That's what the doctor said as well, so that's reassuring to me, to know that yes, it'll be a bad week, but once it's done, he'll get back to normal, yk?

Elise and Vicki, did or would they test for IgD?

not sure what IgD is, I'll have to read up on that and ask the alelrgist next time.

Kelly thanks for the link! :)  The allergist said in severe cases it will involve vomiting, dehydration and hospitalization but that there are milder cases which usually cause diarrhea and reflux flare ups.  She also said that while usually it is immediate, it is not rare that it is a delayed / buildup type of reaction.  Last tie the paeds referred us to a paed GI at the children's hospital, the allergist said it would be good to go and get a second opinion about it.  So we'll go whenever they call, not sure when that will be though. And isn't it a fantastic sign when a doctor encourages you to go for a second opinion!!
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: koe2moe on June 13, 2012, 17:50:14 pm
IgD immunoglobins.  I wonder if they would also test for that.   To make a long story short, i was tested for IgD and IgG to check for my immunity and the internist was expecting to see hypo (under) activity.  The results came as a huge surprise as my immunity was normal and IgD was hyper (4 times above normal).  It showed that my repeated high fever with infections might be to do with this hyper activity.   I then started eliminating home made bread which i thought was the culprit.  3 months later, i got a repeat of the blood test and the IgD came down by half, still hyper but only double the normal amount. 

I wish i could go see this amazing doc!! 
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: my3girlsjde on June 13, 2012, 17:59:05 pm
LOVE the Dr's that encourage second opinions and my all time fav was the one at Emerg that said "it's a bad Dr that doesn't listen to Mom" ;D

So doing some more reading over the past half hour and this is exactly E except the vomiting and it has varying degrees of delayed-ness. Milk is within the hour. Some fruits within the day and others take a couple.of days. And here's the fun part: she could have a banana today and be fine. Tomorrow if she had one not so great and the third day she's a mess. But then if she had a banana today and a strawberry tomorrow then she would also be a mess. This stuff really builds up.

You have no idea how much I hope that wheat is included in this for her over the potential of celiac. Wheat is what had her admitted to the hospital lethargic, and dehydrated a couple of months ago.
Not severely dehydrated but I was told to push the fluids. The xray and ultrasound showed inflammation but no cause for it. The pieces might be finally be fitting together in the puzzle.

The great thing I've read here is that 90% of these kids outgrow by the age of three.

I kind of put the FPIES suggestion on the back burner because I was told that where she didn't vomit, she didn't exactly fit as well as the long delay in her reactions. But I am going to be printing off some info for our appointment next week as I know he wants to start some food challenges and I would like to discuss this a bit fuller.  Thanks so much for sharing this and getting me thinking again :)

Koe we didn't do any testing for IgD . What would that show? Thinking of my intolerance to shellfish and my negative test result for a shellfish allergy, I am very curious about this now.
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: Amanda5555 on June 13, 2012, 18:13:17 pm
Oh Elise that's wonderful!!!!!!!!!!That is the way its supposed to go and I'm so glad for your LO. I'm in tears reading your post so happy for you!!!!!!You should definately consider reporting the ped docs you saw not the good one of course. Nothing changes or gets better if its not reported.
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: ENMS on June 13, 2012, 18:20:31 pm
I kind of put the FPIES suggestion on the back burner because I was told that where she didn't vomit, she didn't exactly fit as well as the long delay in her reactions

From what I read when I googled it, that's the feeling I got, but the allergist didn't seem bothered at all by that.

She also congratulated me for stopping the foods right away, and waiting until he was completely better before trying to re-introduce it or to introduce something else. What an amazing doctor, really.

Koe, come visit Quebec and I'll make sure she sees you! :) I'll read up on the igd testing. I'm so excited right now, trying to research all I can but DD is home because she's sick so I don't have that much internet time ;)

You have no idea how much I hope that wheat is included in this for her over the potential of celiac

She did say that there was a list of standard foods, but that LO's were all different so my DS might react to something not on the list, or he may not react to some standard items on the list. I really hope for you this is it, it would be so much better than celiac!

Thanks Amanda :)
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: koe2moe on June 13, 2012, 19:39:42 pm
Elise, how very nice of you!  I am really tempted, u know!  :)

Just a bit more info about IgD.  There is a documented syndrome called hyper IgD syndrome where patients have high fever constantly and other inflammatory symptoms.  They are thought to be hereditary, so some babies would be constantly with high fever and it seems like they might out grow it.  If you google it, you will find that it is all about coping with it and waiting it out. 

The internist wanted to see if i fit into this group even though I clearly wasnt a baby ::). So she requested another blood test, to see if i have the other markers, just for interests because there are not that many documented cases of Hyper IgD syndrome.  I didnt fit in and my level dropped by half, like i said.

I had no typical allergy symptoms back then, so she couldnt refer me to allergist, due to healthcare system here.  She didnt discredit me that the bread might be at least one factor but she couldnt help me more.  She told me to continue to do what i was doing and try acupuncture for my symptoms!  I wish i had got an IgE blood test when I started out with NAET. It will be so interesting to see what my readings would compare!  Hindsight! 
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: ENMS on June 14, 2012, 11:47:19 am
I read up a lot of stuff in french last night and it seems widely accepted in french litterature that there are two forms of FPIES: acute with the vomiting within hours etc, and a slow-onset one, with usually reflux flare ups and soft stools with mucus / diarrhea.  The slower onset form will progress to acute if not treated properly (i.e. if offending food is not removed right away, or just over time it can become acute). Usually the slow-onset one can be specifically related to milk and soy, but can include solid foods as well.

I found that was quite interesting because when I read up in english there was no mention of that really, and as some postings have said, it is usually accepted that there needs to be projectile vomiting to be diagnosed with FPIES.

So maybe here we do use a lot of the french stuff and that is why DS got diagnosed with that while some LO's in other areas have not?

Just wanted to put this out there as I found interesting the differences in diagnosis...
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: my3girlsjde on June 15, 2012, 03:49:25 am
Very interesting about the language difference. E would fit the bill for the slow onset one, and was getting pretty uncomfortable near the end.

Kind of a catch '22. I could have kept her on all of the offending foods and she would have likely been a projectile vomiter. And taken more seriously. Or happy, healthy baby hard to diagnose.

Thanks for posting that. Will definitely update after our allergy appointment next week.
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: ENMS on June 15, 2012, 12:17:39 pm
Kind of a catch '22. I could have kept her on all of the offending foods and she would have likely been a projectile vomiter. And taken more seriously. Or happy, healthy baby hard to diagnose.

Exactly... so sad though that your doctors didn't take you seriously. Again, I cannot believe how lucky I was with the allergist. 

(((HUGS))) Vicki.

We met with the nutritionnist yesterday, she will assist me with the introduction of solids.  She has also shared with me what the other kids she works with can and cannot eat, and showed me how to do a food journal. It was interesting.

I'd say that yesterday was hard for me though.  The reality hit me hard.  Up until not long ago, I thought he was allergic / intolerant to milk and that it was going to be a challenge, but by 1-2 years he would be ok.  Wednesday changed all of that. He's likely to be allergic to a whole lot of thiings, we won't be trying milk anytime before 2 yrs old, and he is at risk for a severe reaction.  I was a bit freaked out at night.  I know it will all be ok, but it's a lot to process.  DD is in a home daycare and DS will be going there this fall, I was scared she would not want to take him because of all the restrictions it will put on her (I will have to bring all of his meals of course, but she still needs to be much more careful about everything).  But I spoke to her yesterday and she is more than fine with having him, thankfully.
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: anna* on June 15, 2012, 12:48:39 pm
There is another FPIES mommy on the forum... I want to say Maggie? Her daughter did have the full blown projectile vomiting reaction.... perhaps one of the mods could do a search for you and give you the username so you could get in touch? I know her diagnosis was over a year ago, perhaps even more, so she might have some pointers for you.
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: ENMS on June 30, 2012, 13:54:13 pm
We started trialling apples on Monday, I was super positive until I realized that he's been increasingly waking up at night since Tuesday night and increasingly fussy during the day.  So, no classic FPIES reactions - his poops are fine, no vomiting, no increased spit up, everything seems fine.  But we have one fussy baby, and two exhausted, sleepless parents. So DH disagrees but I'm quitting it as of today. Even though it is not an 'official' failed food, I'd rather have a happy baby and happy parents. Give it a few days, hopefully he'll get better and we'll trial pears this time. I went with apple because that's waht the nutritionnist recommended, I knew it was bad for reflux but I figured maybe his reflux was just caused by the FPIES and that if we could get one good, FPIES food, then the reflux wouln't be as bad.
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: my3girlsjde on June 30, 2012, 14:02:49 pm
Hugs about the apples hun. We've had so many failed milk attempts and so any things come up that i think you've got the right attitude. And the lovely thing about reflux bubs is it may be anything making him miserable with the apples. FPIES or the reflux so who knows.

Good luck with the pears :)
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: Amanda5555 on June 30, 2012, 15:47:57 pm
Oh sorry about the apples!!!!!! That sucks (HUGS)
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: maggie2 on August 06, 2012, 17:57:59 pm
Good memory anna!!  Yes - it was us with the experience with FPIES...

Elise - I'm so sorry you're going through all of this!  I'm going to go back through and read everything but wanted to reply quickly.  I can totally relate to what you're going through so if you have questions or just want a virtual hug, here I am:)  Pm me any time...

Here's a thread I started when my dd first started solids and had her episodes - http://babywhispererforums.com/index.php?topic=165003.75
not sure if it's in this thread where we finally figure out it was FPIES - the doctors had NO idea what was going on.  It took three months for a diagnosis and that was only after I googled like a mad woman and found out about fpies myself - I then brought the info to the her allergist and told her that THIS is what she has,  We had the official diagnosis that week.  Odd though because believe it or not, our allergist works with one of the leading fpies docs and still didn't make the diagnosis until I brought it up months later ::)

Anyway - this is bringing up all sorts of old emotions!  I read some of the thread I started and remember now how horrible that whole thing was.    We had to avoid everything on the list for several months and more than once I found myself in the babyfood isle of the grocery store fighting back tears and wondering how the heck I was going to feed my daughter - there was literally not one thing she was allowed to eat in those isles.

But do know that things are much better now!  She's 3 now and we've introduced almost every food successfully - we still don't give sweet potato and winter squash (the two that she reacted to initially) but will wait to schedule hospital trials for those.  My dd also reacted to dairy, soy, and eggs on the patch test - we introduced those at home and she's fine with them now, so I think she's probably outgrown the sweet potato/squash thing too by now.

Anyway..  big {{hugs}}!!!!  pm me any time:)
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: PixieD on August 10, 2012, 21:51:04 pm
Hi, just had a quick look on the allergies board not really expecting FPIES to be here but it is!

I think we had an episode like this on Wednesday. But it's strange, I haven't introduced anything? No solids as yet, but he woke, took his bottle, and about an hour later was reeeeeeally tetchy, fussy.

I thought it was weird for him to be so tired so soon but a change of scenery wasn't helping, he was acting tired, so I took him up and started the whole 'nap time' process. Laid him down and said out loud to DH 'it's weird I don't think he's tired' and as I said it he projectiles across the room (sorry TMI), he started screaming and I just scooped him up, both of us covered, me crying like a loon ha!

DH came and held him while I got it together wracking my brains for what was wrong with him? I was downstairs cooling some boiled water for him as it was all I could think of.

Went back up and he was all sleepy on dad so DH just told me to put him into bed, we both thought he must have a bug. He was in there 2mins and did it again.

After we gave him an oz or so of water DH had to go to work, so I just sat with bubba on the sofa, he was sooooo dozy. Then in his sleep he projectiled again, then started kind of dry gagging (like when youve had waaaaay too much to drink - weve all been there!) and was white as a sheet, I felt his head thinking he must have a temp but he was cold and clammy...

This REALLY worried me - I couldn't work out if he was floppy or just sleepy it was horrible. In the end I gave up waiting for the doctors surgery to open and took him upstairs with me so I could quickly get dressed and I was gonna take him to hospital.

I laid him on my bed, recovery position, just while I threw some bottoms on and changed my soaked top.

Then I hear him gurgle.... Turned round and he's grinning at me?! Colour had come back to his face, exactly back to his normal self? I was so confused?

Anyway sorry for the long story - a doctor eventually called me back as I just wanted to know what to do regarding dehydration but I'd had a wet nappy out of him and he'd taken a bottle and kept it down so I thought he must be fine. The doctor reckons a bit of phlegm must have made him gag - I was like 'oooookaaaay thanks for your help!'.

So it was basically this episode that made me google his symptoms, think I wrote 'vomiting, cold and clammy, baby' something like that and found info on FPIES.

He is a very sicky/refluxy baby anyway - and this info said that the mild reaction can be just that, and loose stools - well his nappies have always been hideous but I thought that was normal. But as I was reading about the pale clamminess it was basically saying that was shock?!

So it could just be a coincidence - it has NEVER happened since he's been on formula, his vomiting was the whole reason I switched to formula as an elimination diet thing was taking too long to work out, and I just wanted him better. But he's always been very very sicky, it's constant, all day every day and HVs just tell me it's posseting and you just go 'yeah ok if you say so' but as he's healthy and gaining weight I didn't think it was a problem but after that the other day I'm a bit spooked.

So does that sound like something I should pursue to you guys? Even Dr 'probably just gagged' said a bug/infection wouldn't come and go that quickly....

If you don't mind me tagging on here your thoughts would be appreciated. What with his flat head and now this I'm starting to feel like I'm looking for these things!

Xxxx


Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: ENMS on August 10, 2012, 22:26:14 pm
Hi there! :)

Sorry you have to go through that. It must have been terrifying. I don't have much time now but wanted to ask a few questions

how long has he been on formula?
what formula is he on?
how old is he?
how often did he vomit with breast milk?
when you say his diapers are hideous, what exactly is the issue with them?

In the meantime, here are a few links that I found helpful.

Will be back tomorrow :-*

http://community.babycenter.com/groups/a4859345/fpies_food_protein_induced_enterocolitis_syndrome
http://www.thefpiesfoundation.org/
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: PixieD on August 11, 2012, 08:52:25 am
Aw hi thanks for coming back - yeah it was scary, I just can't believe how quickly he came back? Don't get me wrong I was soooo glad - just completely baffled, until I found this info on FPIES.

He's been on formula since he was 4weeks - so 14weeks now.

I started him on 'Aptamil First' and I remember the day I gave it to him, I used a carton and he was like a different child it was great, so I went and bought a tub and he went back to normal. I looked into it and apparently the cartons are heat treated which breaks Lactose down more than the powder. So I thought if this is the case I'd look into a formula with less lactose in it and started giving him the 'Aptamil Comfort' with 40% less Lactose, which he seemed better on, still sicky but far less uncomfortable.

He's 18 weeks now.

He was always sick with breastmilk, he was fine for the first two weeks then suddenly couldn't keep it down, had a few projectiles but mainly just a puke here and there (all day long) like he still does now.

His poos are runny, he doesn't go that often either which I'm told is normal with bottle-fed bubbas, sometimes theyre smoother/thicker than others but quite often it's very runny.

I've always had it in my head that he couldn't tolerate something. Especially after the research I did when he was tiny as he was so uncomfortable/refluxy (and Gaviscon is just pathetic - Drs annoy me - so quick to just medicate 'here shove this in his bottle' not try and work out the cause) but I thought I had nailed it, maybe it's the protein though and not the lactose. I can't really do dairy either, I get bloated/wind sometimes heartburn and a runny nose from milk, so I just give it a miss most of the time. My dad was always thought to be lactose intolerant but has recently been diagnosed with Chrones Colitis - I looked into these things but couldn't find anything saying it was hereditary...?

I spoke to Aptamil a few weeks ago as he is getting very hungry - HVs said I should start him on rice and I'm glad I didn't just in case! I didn't really want to start shoving spoons in his mouth yet he just doesn't seem physically ready to me and it's not something I want to rush. I was asking about the Hungry milk, but the Aptamil lady explained that going from Comfort to Hungry would be difficult for him as they're at opposite ends of the scale digestion-wise. She suggested I try him back on First as its still more whey based than the Hungry milk (Comfort is 100% Whey). I have put a bottle of First in here and there - the woman advised one bottle one day, two bottles the next day and so on, but I wanted to take it slower than that, and was going for the second bottle of the day at first (in case he was uncomfortable/sick etc I then had all day to do something or whatever) he seemed to be getting on with it fine, but you can tell he's had it as his sick is different, it's more like cottage cheese, when he spits up on a Comfort bottle it's more saliva-y.

I didn't give him First that morning though, it was the same old Comfort. Weird weird weird, and so scary, I just wonder if something from the First was building up, or if that morning was a delayed reaction to one I'd given him the day before - or if it is all just a huge coincidence and probably won't happen again!

I just don't know.

Thanks for coming back - and those links are brill I've read them before but it's handy to have a link to them as I can never find these things again ha!

Xxxxx
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: PixieD on August 11, 2012, 08:52:56 am
My posts are so long winded I'm so sorry ha! Xxx
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: ENMS on August 11, 2012, 23:43:53 pm
Hi there,

Obviously I'm no FPIES expert... I've done lots of reading though.  Usually, severe reactions occur 2-5 hours after ingestion. But some can get delayed reactions, although usually they are milder. My DS gets delayed reactions - 4-6 days after we start a solid food things go bad. I always stop the food before he gets to severe symptoms though. You can also have big reactions if you remove an offending food and then introduce it back. 

How long has he been on First?

Honestly it's hard to tell whether it was FPIES or not.  The reaction does sound like an FIES reaction, but the timing seems a bit off ???

So I think you have 2 choices: either you 'test it' and offer the First again, or you just avoid it for now. 

Obviously, if there is any FPIES risk, I would steer clear of rice cereal (it is the most common food FPIES babes react to), and all of the shortlist of common triggers. I can send you the list if you want. I would also not introduce any solids earlier than 6 months and go very slowly once you do.

Does that make any sense?
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: PixieD on August 12, 2012, 09:33:46 am
Hiya, yes that makes perfect sense and if you do have the list of common triggers that would be great.

It was just the strangest thing, the severe vomiting, about 1hr 30 after the bottle - which he always has... I'm gonna knock the First on the head.

I am just hoping it doesn't happen again.

Thanks for coming back :) xx
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: ENMS on August 12, 2012, 12:57:26 pm
Lots of (((HUGS))). I hope it won't happen again :).  Feel free to come back and post here or PM me if you have any other questions or if you need support.

The second link is a survey taken by mommies of FPIES babies, where they responded to which food their LO has reacted.

http://www.kidswithfoodallergies.org/resourcespre.php?id=99

https://docs.google.com/spreadsheet/viewanalytics?hl=en_US&formkey=dFJKLUhPUWtYRW5RZk1ESGVMOHlVMkE6MA
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: maggie2 on August 12, 2012, 14:50:44 pm
PixieD - has pyloric stenosis been ruled out?

edited to add - the cold and clammy thing/returning to normal quickly thing does sound a lot like FPIES though!  My dd looked so bad they were convinced she had meningitis and even treated her for it.  Then they admitted her and once we got to our room, she was totally fine and the doctor up there had no idea what was going on or why a child looking this good needed to be admitted!!  lol.
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: maggie2 on August 12, 2012, 14:59:23 pm
Elise - interesting link!  The one with the pie charts - I'll tell you..  I wish doctors would listen.  I was basically forced to allow the docs to place an ng tube and feed only elemental formula (as opposed to me continuing to breastfeed like I had been doing for 9 months with no reaction - they literally told me she could die if I breastfed her again  ::)).  I keep telling them that the formula was making her SICK!  She would retch and vomit with every single feed, but it wasn't like her sweet potato/squash reaction.

Anyway - looks like elecare has a decent amount of reactions associated with it (this is the formula she was on).  The doctor kept telling me that there was no way she could react to it.  I don't know - maybe not a true reaction but I feel better knowing I wasn't being dramatic.  She literally couldn't keep the stuff down.  It was horrendous - the sounds she would make as she tried to get that stuff up...

Urgh - this is bringing up so many old but still raw emotions!!!!
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: PixieD on August 12, 2012, 17:29:26 pm
Hi Maggie :) nope no ones seen him really, when his 'reflux' started I took him to the docs and got given Gaviscon Infant and sent on my way. Since then I started looking into why he was so uncomfortable and thought l had nailed it with the Lactose thing. He still throws up all day but in himself he seemed better so I thought that might have been it.

Then I started him on a very infrequent bottle of the First milk here and there and suddenly he had that funny turn but I'm sure the bottle I made up for him that day was Comfort... Either way I've gone back to the comfort completely now just in case, I was scouring the ingredients and noticed that Comfort says 'Hydrolysed Whey' and the First says 'Demineralised Whey' so not sure if that's made a difference, by the looks of it (from google lol) it seems Hydrolysed is more broken down...

Ugh I dunno - I was literally hospital-bound cos I thought something awful was happening to him I really did, he was THAT awful looking/acting, then I turn round and he was fine - that quickly... Completely back to normal in about 3hrs from start to finish... Weirdest thing.

So yeah I dunno - ill look into what you said though, I've always had a feeling something wasn't quite right - thank you :) xxx
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: Amanda5555 on August 13, 2012, 16:10:23 pm
NO expert here but thought I would chime in about the projectile vomitting. True projectile vomitting is so forceful it shoots across the room. If an infant has that there should definatley be further investigation for sure to rule out stomache emptying issues like pyloric stenosis, and food intolerances reactions.   :)
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: PixieD on August 13, 2012, 21:45:25 pm
Yup that's it, the first time he had his dummy in so it kinda squirted out in all directions before shooting the dummy out and going up into the air - so frightening... And he did it and did it until he was dry-heaving like when you've had too much alcohol... He was soooo exhausted he did it in his 'sleep' (not sure he was actually asleep, more like resting) he was on my lap and it shot out, right past me, across a three-seater... Went all grey/pale looking, cold and clammy, I decide to take him to hospital, look round and he's come back, colour in his cheeks, clamminess gone... So strange.

I'm watching everything now, I'm sticking with the comfort and if it DOES happen again I'll get him checked out - I read that it can't be diagnosed if it's not happened more than once? I personally think he's reacting 'mildly' all the time (only because of something I read on the kids with allergies info), my friend's baby, same age same formula has much 'firmer/smoother' stools, I always thought LOs nappies were normal but now I'm not so sure about that either.

That said, he is thriving, and something may have gotten into him that he just had to get out and it's nothing and I'm over reacting... I can only keep my fingers crossed that it doesn't happen again and when it comes to solids we'll go reeeeeeal slow....

What's Pyloric Stenosis? Xxx
Title: Re: Food Protein Induced Entero-colitis Syndrome (FPIES)
Post by: ENMS on August 14, 2012, 02:46:56 am
something may have gotten into him that he just had to get out and it's nothing and I'm over reacting

maybe, maybe not. I always thought I was overreacting but always ended up totally right. your momma instinct is the best thing to rely on at the moment. :)  it is the right thing to be careful for now (IMHO) and to pay close attention.

Here's more info about pyloric stenosis
http://kidshealth.org/parent/medical/digestive/pyloric_stenosis.html

lots of (((HUGS)))